I am not pregnant

Let's just be clear from the start. I don't want anyone to only read the first few sentences of this and hurriedly offer congratulations. I am not pregnant. No fetus is in progress. Ian is still an only child. Rich is not allowed to conceive a child while on the trial drugs from Sarah Cannon. I don't think they would kick him out of the study for it, but there are lots of warnings in the paperwork. After his previous trial, he had to wait 90 days before he could conceive to ensure the meds were out of his system. He took his last pill on June 18. That means he was cleared to conceive as of September 19. We were already back at Sarah Cannon on September 15 discussing the next trial for which Rich was eligible.

I had stopped taking birth control pills in August in anticipation of trying again, but to say that we had a small window to conceive is an understatement. We went to the Jones Institute to freeze sperm on Sept 22 just in case. My window of fertility was the beginning of October.

We had a lot of sex. This is not standard "we're in love and excited and going to make a new life" kind of frequent sex. There are IV lines and fistula bags and wound care issues. We have a five year old in our house and frequently in our bed. We're flying to Nashville for medical appointments. I'm traveling for work. This is not for wusses.

I was so convinced that if we just worked hard we could make this happen. I looked for a midwife. I talked to our doula. But just like clockwork, my period started on October 12. At that point we had been assigned the week of the 27th through 31st for Rich to start his next trial drug. I would be most fertile that same week. It was down to the wire. This is not for wusses.

"Hey honey, let's pack up all your TPN and wound supplies, fly to Nashville for a week where you will be examined and scanned and injected with mystery chemicals. And while we're there, let's have as much sex as possible to race to make a kid. Yeah, I know your fistula output just sky rocketed to two liters a day, but I'll light some candles and play Sarah McLaughlin and it will be fine."

We survived that week but only barely. Now we just had to wait and see if our hard work paid off.

It only took me one cycle to get pregnant with Ian. I stopped taking my birth control pills, which I had been taking for 17 years straight, and the next month we made a person. Pretty easy. As my friend says, I could have used Rich's toothbrush and gotten pregnant.

This time, it's been harder on many levels. If I managed to get pregnant, I would be 36 weeks when it was time to fly to San Francisco for the American Library Association conference. I would be seven weeks pregnant when I ran another 5K and half marathon back to back. I would be desperate to sleep all the time but still responsible for groceries, laundry, housekeeping, child care transportation, TPN delivery, wound care and that little thing called work. Oh, and logging all my blood sugars and food for 36 weeks. But it all seemed worth it to expand our family as we have wanted and do so without paying thousands of dollars to have it done by the Jones Institute.

Here we are, though, Monday morning of my period week and I'm most definitely not pregnant. That means our great pregnancy experiment has come to a close as quickly as it was put into motion (no pun intended). I'll go back to the pharmacy and refill my birth control pills for next week.

I did some of my best positive thinking these last two months. I bought prenatal vitamins. I reactivated my account on BabyCenter to calculate a due date. I saved my pants that are too big for me. I let my alcohol supply get alarming low. I made a spreadsheet of my hours to see how many weeks I could spare next summer for maternity leave. If optimism alone could conceive a child, I would give Kate Gosling a run for her money.

But no luck.

I am mourning something that never happened, a life that never even started other than in my imagination. I would like Ian to have a sibling other than Cancer. But as someone told me, no sibling for Ian is worth having a mother who can't pass a field sobriety test because of exhaustion. We are all stretched thin right now.

Don't hide your babies from me. Don't hide your beautiful round pregnant bellies from me. I'm hosting a birth circle tomorrow evening at our office where we all sit around and talk about birth stories, the excitement of pregnancy, the joy of birth, and the trials of motherhood. All those things are still important to me. I'm just cheering others on from the sidelines right now.

I'm going to spend the next six months or so reveling in the body I only recently got back from my first pregnancy. I'm going to buy new smaller pants. I'm going to restock the alcohol in the house. I'll devour some unpasteurized soft cheese, gas station sushi, and questionable lunch meats. Maybe I'll do all that while sitting in a hot tub. I'll get a foot massage. I'll keep training for my half marathon later this month and the one in March. I will revel in my bladder control. I'll get my HbA1C back down to something reasonable before my next endocrinology appointment. I'll keep everyone posted on the status of my #wasbutt.

Measuring progress one cc at a time

It's been a rough week at times, but we are still making progress. Sunday night, Rich left the house. We all went to Sonic for milkshakes and a diet cherry limeade for him. He didn't have to get out of the car, but did leave our property. Monday I took him to Great Clips for a haircut. He didn't get a washing because they don't offer that service, but he has a lot less hair now and looks more like himself and less like a hobo. So that was a success.

Monday night was hard in that Ian didn't fall asleep until after 10pm, I stayed up until midnight so I could disconnect Rich's IV (the beeping scares the dog), and then at 4am Rich's wound pouch leaked. We spent from 4am to 6:45am removing, cleaning, assessing, showering, crafting, measuring, reapplying and recovering. At 7:30am, Ian woke me up with an X-wing in my face asking if he could take it to Jenna's.

You know when you get so tired that you feel drunk? That was my Tuesday and Wednesday. I didn't get a chance to nap because of follow up wound maintenance and work stuff until Wednesday. When my mother called me I had no idea what day/time/planet it was. It's alarming.

Tuesday Rich went to Sonic again. Wednesday he had to get yet another new wound pouch and that put him in a funk. He didn't leave the house but did climb the stairs once. I also got furious with the Sentara nursing staff because they showed up on Tuesday night at 10:30pm to draw labs. I was not happy with them. She came because the labs they drew on Monday had an error but the number they had on file was Rich's cell which is set to silent 99% of the time these days. And woe to the poor woman who called Wednesday morning saying she would be out for Rich's regularly scheduled labs and I told her, "oh, no you're not!" Shenanigans.

Thursday got a little better. Rich went to Zero's with us for dinner and pinball, so that involved exiting the car. But I also got rear-ended on Thursday while trying to find a medical supply store to get more wound pouches for Rich. Thankfully, it was just a bumper mushing and the car drives fine. The lady who hit me was super nice too, so all told it was the best read-ending I could hope for.

But that was the lead up to my coming back to the house without ostomy supplies, hoping the wound nurse would show up with some emergency supplies for us and that Sentara could send someone Friday with new pouches. The Sentara nurse called to tell me no one could make it out until the next day and started in with, "In the future, it would be good if you don't wait until the last minute to request supplies ..."

I did not yell. But wow, did I give her a piece of my mind. We came home on Thursday the 3rd. We did not see a wound nurse with ANY supplies until Wednesday the 9th! That wound nurse said that the largest output she had dealt with personally was 1000cc a day and that person could only get a pouch to last one day at best. We were collecting over 2500cc at the point and I was able to keep a pouch working for at least two days, depending on the circumstances. We have been neglected as far as supplies all along and the wound nurse assured me someone would get me supplies immediately since I used the last of any pouches that would fit on the ever changing wound landscape. So don't chide me about being unprepared or incommunicative about supplies. I am the best wound nurse in Southeastern Virginia at this point. Just bring me my small Hollister brand pouches, more 2" ostomy seals, some foley bag tubing, some medium sized gloves, and leave the sass at the office.

I got my supplies Friday morning. And it's a good thing because when Rich and I tried to go to Tropical Smoothie Cafe for dinner, his pouch leaked as he stepped out of the car. Poor guy just can't catch a break. So we had to clean him up with baby wipes and let him wait in the car while we got dinner so I could take him home and put yet another pouch on him. That pouch has held so far, but I'm checking it every few hours just to be sure.

The fistula is healing because his output has gone down. It's just moving from place to place. The JP drains (one near each hip) are empty today so everything is coming out of the wound pouch. But his large wound at the bottom of his incision is no longer leaking any output. It's all coming out of a circle about 3/8" across. That one little hole, though, is still producing about 1300cc as of yesterday. Much less, but still significant. Setting up the wound pouch each time is like following a moving target. Should we cover the large wound or do we think it's dried up? How much extra wafer should we put in the incision line to prevent leaks? Should I wiggle around and see if I can get the JP drains to collect again? I felt like I was doing well last night that it only took me about an hour to replace the pouch. Needless to day, my back is killing me from leaning over him for that long. I have to wear a head lamp, put my left ear on his dick and then peer up into the wound to assess how it's doing. All part of the job description.

All the medical troubleshooting is not that bad, actually. The hardest part of all this is the emotional toll. No one likes to pull tape off of someone if he looks like it's taking his entire spirit along with it. That said, I was super proud of Rich last night. When his pouch leaked spectacularly as he stepped out of the van, I expected that to send him into a spiral of depression but he was a trooper. He walked in the house, took his shirt off, and casually watched TV while I worked. It was such a relief, at least as much as an emergency pouch change can be.

Today was good. We took a trip to Atlantis Gaming store for the latest D&D starter set and some Star Wars miniature game ships. He hung out in the car with Ian while I went into Home Depot for wall anchors. All told, we were out of the house for about two hours. I have a new policy where he has to cross the threshold of the house and go outside at least once per day. It can be to the end of the driveway or further, but he has to leave the house. So far so good.

This whole update was mostly a brain dump, but I just wanted to get it all logged before I forgot.

Ian has been great through all of this. He just wants to hang out with us, in whatever form that takes. He squeezes onto the twin bed in the office with Rich to watch TV. He brings his Nintendo DS or iPad to the stool next to the bed just to be near Daddy. He could not care less about the tubes. It just goes to show that more adults should take their cues from kids on how to deal with stressful situations.

Baby's first smartphone

I got our four-year-old his own smartphone. He can't read and he rarely can stay on a call for more than five minutes at a time, but I don't regret the decision at all. Last week, Ian asked for my phone so he could take a picture. He's been asking for my phone more and more, but for photos not games. This was the picture he took.

Not bad for his first photo. The best part is he understands how not to block the lens. He knows how to unlock my phone, navigate to Instagram, frame the shot he wants, and press the shutter button while keeping the phone steady. I just have to make sure he is aware of traffic in the parking lot while he's composing his masterpiece.

The next day, I asked Marilee if there were any old phones lying around the office I could buy or if I'd have to try eBay. Work didn't have any spares, but she had an old iPhone 4S she wasn't using for music anymore. She offered to bring it in the next day. Angela happened to have an old Otterbox case and we were in business!

I was going to leave the cellular plan disabled, figuring Ian could play games, take pictures, and use it wherever there was wifi. But even taking it with me to my lunch meeting, I got annoyed that I couldn't download a new app I thought of until I got back to the office. On the way home from work, I started to wonder how much it would cost at the Verizon store to activate the cellular.

30 minutes later, my four-year-old had a phone number and a data plan.

I felt a little guilty at first. Maybe he would have been okay with just the wifi aspects. But have you ever tried to explain to someone under the age of 6 the difference in wifi and cellular? Is it only in people's houses? All houses? All stores? Some schools? At hotels but probably not worth it because it's unusably slow?

I told the Verizon associate I was activating this phone for our son. She had several questions about how much data he would be using and I wasn't sure how to answer. Once we'd picked a plan and she was setting it up, she asked how old he was. I sheepishly told her that he was only four and she assured me that I was not a horrible mother for getting him a phone. Mind you, she does sell phones for a living so she's a little biased, but I did feel a bit better.

I had told Ian the night before that I would have a phone for him after work once I got it from Marilee. When I picked up Ian from Jenna's he had forgotten about the phone in all the excitement over playing in the pool. But when I showed him his phone and told him he could make calls whenever he wanted, he was delighted. I told him he could take photos all his own. He may have squealed.

That evening he told me, "Mommy, I need to make sure I have shorts with pockets so I can carry my phone around." We lounged in the bed that night watching Tinkerbell while I held his phone for him. After a bit, he said seriously, "Don't forget, Mommy, that's my phone." And when the movie was over, he yawned and rolled over for bed but then sat straight up and exclaimed, "I need to charge my phone while I'm sleeping!"

I showed him where all the 30-pin chargers are in the house so he knows how to recharge it (the line on the charging cable goes face up). I showed him how to get to the phone icon, choose the favorites star, and click on my picture to call me. I showed him how to tell if the phone was on wifi or not with the little icon. He's learning how to count to 100 and understand that 87 is larger than 32 versus just two big numbers, so he can decipher his battery life. He's worried that he can't message me since he can't type yet, but we're working on that. I expect a steep learning curve over the next few months.

He woke up the next morning and checked the phone's battery life first thing, but then was happy to leave it while he got dressed and ready for breakfast. We took it with us to Panera and did a practice call across the table to test it out. He was very pleased. I asked if he wanted to look for new shoes at Wal-mart and he was pretty excited. He took his phone with him in his shorts and I feared the elastic waistband may fail under the weight.

We headed to the shoe department and he found several he liked. All of a sudden, while sitting in the floor about to try on Lightning McQueen shoes, he blurted out, "Woah! I gotta take a picture of these!" He then dug out his phone, opened the camera app and took several pictures of the shoes before trying them on and deciding to get them. It was my turn to be delighted.

We looked for a few more essentials while there, and when we passed the dairy aisle, Ian had to stop and take a photo of the cottage cheese.

I don't know where he gets it from.

Soon it was time for him to go on his adventure with Sara and her boys while I drove back down to Winston-Salem for Rich's surgery. Ian kept telling me he was going to miss me, but I told him he could call me on his phone whenever he wanted and that seemed to please him. I hadn't been in the hospital an hour before Ian had called me. It was approximately a one minute phone call, but Ian called just to tell me, "Mommy! I'm calling you from my very own phone!"

My parents don't have smart phones. The last time I was in North Carolina with Rich while Ian was home with them, I learned it's very hard when all three people want to talk to me at once. So Ian is feeling very in control just knowing he has a phone that is his own personal connection to me whenever he wants. He didn't call me this morning before he went on his adventure with Stephanie. But he has several photos and videos waiting for him on his phone when he gets home.

Under other circumstances, I don't think I would have bought him a phone. But when both his parents are in another state for two weeks while his dad has major cancer surgery, it seems completely reasonable to me. I would have bought him a helicopter if I thought it would make any of this easier on us.

So far his weekend has been pretty great. And I was able to forward the videos on to his phone so he could watch them again whenever he wants.